Promoting patients' priorities through user generated quality of life measures (My QuOL-T) Children’s Hospice South West

The Children's Hospice South West (CHSW) project developed an interactive online tool to help families affected by childhood life-limiting conditions to monitor the issues that have an impact on their quality of life. The Measure Yourself Quality of Life Tool (My QuOL-T - pronounced ‘quality’) provided a simple way for young patients and their families to communicate their concerns and symptom patterns to the clinicians caring for them.

Patients at three hospices used the tool to define particular problems they wanted to measure and add scores to track the impact of these issues over time. The data was shared electronically with selected health care professionals, to help them manage problems more effectively.

Who was involved

The project was led by a CHSW palliative care paediatrician and managed by a University of West England (UWE) senior research fellow. A UWE professor of clinical nursing acted as the academic advisor. Other team members include consultant paediatric neurologists, hospice care team members, and software and financial management professionals.

Impact

• 32 participants used the tool, each for an average of 106 days. 
• 7 local MyQuOL-T Champions were trained to recruit and support families and hospice staff.
• The tool was used by 72% of people who were given a demonstration and/or initial set-up.
• Participants showed improvements in self-rated empowerment scores in relation to children’s services, their own family and community issues.

Challenges

Challenges included managing communication between the hospices, informing and involving local clinicians, and protecting project time during a period of unprecedented clinical demand.